Max Johnson is just 11-years-old, the great-nephew of a Rotarian, and he has been honoured in one of Theresa May’s final acts as Prime Minister.
Two years ago the youngster, from Winsford in Cheshire, received a life-saving transplant.
And since then, he and his family have been at the forefront of a campaign to change the law in England around organ donation
As a result, from 2020, “Max and Keira’s Law” will introduce an opt-out system for organ donation, rather than the current system where you have to opt-in if you wish to leave that legacy.
Prime Minister Theresa May, leaves Downing Street today (July 24th), and she has nominated Max as the final recipient of the Points of Light Award for Volunteering.
Points of Light are outstanding individual volunteers – people who are making a change in their community. Every week day, the Prime Minister recognises an inspirational volunteer with the Daily Point of Light award.
Theresa May has paid tribute to Max and his heart donor Keira. https://t.co/jU77xy2DjR
— NHS Organ Donation💗🫀🫁 (@NHSOrganDonor) July 23, 2019
First established by President George H. W. Bush in 1990, more than 6,000 US Points of Light have been recognised in the USA. UK Points of Light was developed in partnership with the US programme and launched in April 2014.
According to the Prime Minister’s Office: “Since 2014, hundreds of people have been named Points of Light by the Prime Minister, highlighting an enormous array of innovative and inspirational volunteering across the length and breadth of Britain.
I feel like this is very special and it makes me feel happy. Thank you to Prime Minister Theresa May for your support in changing the organ donation rules.”
“Doing everything from tackling knife crime, to supporting families of dementia patients, our UK Points of Light are fundraising, awareness raising, problem solving heroes who all had an idea they decided to make a reality.
“Their actions have changed lives and their stories can inspire thousands more to get involved or start their own initiatives.”
Max was eight when he was diagnosed with dilated cardiomyopathy, a crippling disease which affects the heart muscle.
He needed a heart transplant and was on the list from January until August 2017.
When I read your inspirational story, I knew I had to act to change the organ donation rules. While it will have to have a bit of a boring title when it goes through Parliament, I and my government will call it Max’s & Keira’s Law.”
During that time he decided to share his story as part of a Daily Mirror campaign in favour of an opt-out donation system, so consent to donate organs is presumed.
The youngster owes his life to nine-year-old Keira Ball, who died in a car crash in Devon in August 2017, when her father, Joe, gave consent for his daughter’s organs to be donated.
As Max recovered from the life-saving transplant at Newcastle’s Freeman Hospital, MPs backed a Private Members’ Bill in February 2018.
Then last year, Theresa May declared that “Max & Keira’s Law” would be on the statute books by 2020.
After Keira Ball (above) died in a car crash in 2017, her donated organs saved the lives of four others, including Max Johnson.
The Prime Minister told Max: “When I read your inspirational story, I knew I had to act to change the organ donation rules. While it will have to have a bit of a boring title when it goes through Parliament, I and my government will call it Max’s & Keira’s Law.”
Max’s great-uncle, Robert Lewis, is a member of Hazel Grove Rotary in Cheshire, who have supported the campaign.
As for Max, who is now on his summer holidays, he was delighted to receive news of the Prime Minister’s award last week.
He said: “I feel like this is very special and it makes me feel happy. Thank you to Prime Minister Theresa May for your support in changing the organ donation rules.”
Max’s mum, Emma, said they were thrilled to hear of the news since it offered a perfect opportunity to promote the new law change.
“As a family, we are very proud of Max, and there is something very touching that the Prime Minister has reserved that final Points of Light Award of her Premiership for young Max.
“As regards the law change next Spring, please #passiton.
“We are delighted that the Government is investing £12 million into the publicity campaign to make people aware about the law change. This means that more and more people are talking about organ donation.
“Our hope is that this results in more ‘known decisions’ which might well push up the consent rate amongst bereaved families.
“Please understand your loved ones’ wishes and have the conversation about organ donation.”
Read more of Max’s story
The August-September issue of Rotary magazine features an extensive interview with Max and a look at organ donation in Great Britain & Ireland.
